I have been reading posts for a while, but too shy to jump in, so here goes! I was diagnosed with CRPS last December after a right foot sprain in October. I haven’t had any luck with treatments, and the CRPS is in both feet now but it is worse in the right foot. I walk with crutches or sometimes a cane. I have burning up to the ankle in my right foot, but most of the pain is localized to the soles, especially in the heels and arches. My right arch (near the heel) can be excruciating and feels like nails being driven in. I have color change in my soles, they can both be red, purplish, or mottled red and white. My feet look totally normal from the top. I’ve never had any nail, hair or sweating changes. In the beginning my right foot was colder than the left, but now they usually feel same and they are sometimes cold and sometimes super hot and red. I don’t have any swelling, and I have good range of motion except I can’t spread my toes on the right foot.

I’ve had two second opinion doctors tell me I also have plantar fasciitis, and one diagnosed it with an ultrasound. She said there was jagged tissue and a band of fluid that shouldn’t be there (on both feet, but the right was worse). She wanted to do a platelet rich plasma injection or a steroid injection and I declined. My original pain management doctor laughed at the idea that all this pain could be plantar fasciitis. I believe I have CRPS, but that plantar fasciitis is contributing to the pain. When I try to do exercises for PF like rolling a ball on the bottom of my foot or stretches it can aggravate the CRPS.

I also have generalized CRPS symptoms like a sunburned feeling all over, muscle twitches all over, and anxiety. I am on gabapentin, baclofen, Peapure, and viibryd (an antidepressant). I have tried Topamax and Cymbalta but couldn’t tolerate them. I had a 5 day lidocaine infusion in March, but didn’t get any pain relief at all from it and it actually increased the all over skin burning. I have also tried ketamine cream, and a CBD topical salve I made from medical marijuana and neither of those helped. I have done biofeedback, acupuncture, and massage, and am currently doing physical therapy, graded motor imagery, cognitive behavior therapy, the paleo autoimmune diet, and I swim about 3 times a week.

My doctor doesn’t think sympathetic blocks are useful, but I am switching care to one of the doctors I saw for a second opinion and will discuss it with him next week. I had a biopsy for small fiber neuropathy and it was normal. I haven’t had a bone scan, EMG or nerve conduction study. I’m not sure what I will try next, but I would like to do a ketamine infusion, low dose naltrexone, or try switching to Lyrica. My doctor is sending a referral to Stanford, so hopefully I can get some more options there. But I’d really like to get to the bottom of what is going on and if I can reduce some of the pain by healing the fascia.

I used to be a laboratory technician and haven’t been able to work since December. I’m sure this is true for most of you, but before this happened I was very active, hiking, jogging, traveling, being a mom. Now my life is completely different. I know I may never be back to how I was before, but I won’t give up on finding enough pain control to be more mobile and happier. I’m looking forward to being part of this group! Thanks for listening and for any input you might have!
Missy

hi and welcome Missy,

I am going to go out on a limb here and say fascia issues could be a contributing factor. Plantar fasciitis can hurt like a son of a.... And anything causing pain is a problem. Treat whatever can be easily treated.

I am not going to go into my whole sad complicated foot story, just the pertinent parts. I had PF, it felt like a nail driven in my medial heel. Then I begrudgingly got a kenalog injection that was NOT ultrasound guided. Shows you what I knew back then. Kenalog crystallizes and non US guided injections at the heel insertion can cause trouble. My fascia ruptured after the kenalog ate a hole in it. I had swelling that did not look like much to anyone but me but it was enough that I could not move my little toe. It is innervated by the first branch of the lateral Plantar nerve and runs right where the PF insertion is. A little swelling in the foot, even when not detectable to the eye can wreck havoc. The sole is highly innervated for protective reasons and has a LOT of sympathetic fibers. If they are aggravated by injury and inflammation that is not helping for sure.

Injections can be a Godsend sometimes but only with the right, careful practitioner and no crystallizing steroids! In a CRPs foot I would advocate for extra caution. most PF improves slowly with stretching. Take gentle care of your foot. A ball rolled under it may just put pressure on the nerves and aggravated tissues. Maybe Start a gentle stretching routine for PF 3x daily, do NOT overstretch. start very slow, just bending the toes back. Then after a week add pulling the foot back, then another week start stretching your calf while pushing against the wall. Do gentle range of motion routinely. Ice is not good for CRPS but getting swelling and inflammation down can help in general. Frozen peas or gel packs that don't get super cold with a cloth in between it and your heel should not cause a nerve problem. Epsom salt soaks can bring down swelling and calm nerves as well. Light compression, LIGHT, can also help.

I am sorry you had to come find us but this is a soft place to land. It sounds like you just may have a resolvable issue that could heal and maybe get you out of some of what is going on in your feet. I think all pain contributors that can be healed safely should be treated in CRPS patients. Get expert help on the PF, do not traumatize the area by overuse and abuse and keep us posted.

Sending Healing Love, Littlepaw

While pain is subjective, CRPS pain is unique.

Experienced CRPS docs should be able to identify the difference.

I would rate my post surgical pain substantially lower than my unmedicated CRPS pain.

The only pain that I've ever experienced that has exceeded my CRPS pain, was the last 10 minutes or so of active labor, before giving birth.

Thanks for your replies! I do think I've probably been too aggressive with stretching, and then it flares up. I will try gentler. I will definitely get more advice from my doctors on how I can try to treat the plantar fasciitis, and revisit an injection possibility, but it sure scares me. I've had PF before a couple of times, but it was mild and would go away after I stopped exercising for a few weeks. This is nothing like that, and the additional burning CRPS pain is totally different and much more painful. I had natural childbirth too, and you're right nothing compares to that pain! But at least you know it will be over at some point. Thanks again!

Hi! Just want to recommend you try skechers 'go walk' sneakers and those ugly big Croc sandals~ the ones that cover your foot not the strappy sandals. I have days w terrible heel pain and i find resting helps. I also never walk barefoot around the house. We have tile floors which kill my feet. I have some sketcher sandals w low rubber soles, their soft soled sneakers and crocs. Look for something with soft squishy soles and arch support too! No high heels, no cheap flip flops or hard soled shoes flat slip ons of any sort. No prolonged standing or walking. Time to baby those piggies!

Hello Missy,

Just wanted to say hello and welcome. I cannot imagine having to deal with this in both feet!! I'm sorry your having to deal with this. You sound like you have a good attitude and are a strong person, which I think is maybe the best medicine to fight this horrible problem.

I take Lyrica, and have only been on it about 5 weeks, and it dulls the pain some, but I feel very, very stoned!! I'm a light weight, and am the type to take as little as possible, so taking 150mg twice a day, puts me in la la land. I do hope you get the opportunity to try it, I would love to know how it works for you!! I also have had 1 nerve block, I have CPRS in my shoulder and now in my neck and face, and it did wonders for about 5 days, I cannot wait to see if they can make it last longer...

Thank you again for your replies. I had an appointment with a new doctor today in Seattle at the University of Washington Pain Center and CRPS is one of his specialties. He said that I don’t meet all the criteria for CRPS but it seems that I have something that comes across as both CRPS and small fiber neuropathy (even though my SNF biopsy was normal). He said that what is going on with me is “CRPSy” enough that he would treat it that way. He thought that it’s possible I could have plantar fasciitis secondary to the CRPS and to treat it with orthotics and stretching, but do not do any injections into the foot because of the “CRPS”. These are the things he said to consider doing:

1. Do the neridronate trial if I am approved (will find out in the next two days, and am scheduled to start on Monday).
2. If not, have a triple phase bone scan and possibly be treated with a different bisphosphonate infusion like pamidronate.
3. Continue with PT, OT, graded motor imagery, and wean off crutches.
4. Try switching to lyrica instead of gabapentin and try nortriptyline.
5. Low dose naltrexone
6. Take Alpha-lipoic acid and Acetyl L-carnitine. (I did take these for a few months but may go back on them now)

It’s so confusing how you get a different view from every different doctor. But I liked this guy, and he was extremely knowledgeable. So, a lot to think about, but I can’t do anything until I find out if I’m doing the drug trial. One funny thing that happened in the appointment: he was going over my history and we were talking about my IBS that I used to have. I said “it resolved when I cut out wheat.” But he thought I said “weed”. Got a good laugh out of that.
Missy

Hi Missy,

I am also a very new member, and from what I see everyone is very helpful. I'm so sorry you're going through this, and with both feet has to be horrible!

Sounds like you are working with a great doctor. I'm also looking into the alpha lapoic acid and acetyl l carnitine.

Good luck with dealing with this. I have to admit though, your original post has me concerned about the ability to continue much longer. I hope that I am someone who can work through the pain (and side effects of the medications).

Take care,
Jes